[tri-med] Re: cleft palate

Hello, Arthur. We had Matthew's cleft palate fixed last summer and he is
doing well with it. The surgery experience itself is another story and I
will have to be hard pressed to put him through another surgery! Since the
surgery we have experienced more congestive noises at night so there may be
a little obstruction related issue and we will be asking for a sleep study
in the upcoming months. Matthew has never been on a feeding tube or a trach
so I have little to offer you in that area. I know Matthew's swallow has
improved (though he still doesn't suck on his bottle...he still chews to get
out the Pediasure). We are still in process to get solid foods down him and
it's going slow but he is doing better than with the closed palate when it
comes to gagging and swallowing. The other thing we have noticed is that he
is making a few more sounds now. This could be because of the palate or
because he is leering new things with his younger brother...it is hard to
tell.

Each child is different, but under Matthew's circumstances, I am glad we had
the palate fixed.

Ruth, wife to Rudy, mom to Brendon (19), Scott (17), Joshua (13), Matthew
Rudy
(Full T18, born 09/13/01, and Rudy Matthew (born 08/13/04)
http://members.cox.net/t18mom

Lord as I face each new day, grant me power, perseverance, patience and
peace. A wish for  you ~ 1 Corinthians 1:3

> -----Original Message-----
> From: tri-med-bounce@xxxxxxxxxxxxx
> [mailto:tri-med-bounce@xxxxxxxxxxxxx]On Behalf Of alang12.1@xxxxxxxx
> Sent: Monday, March 28, 2005 8:36 AM
> To: tri-med@xxxxxxxxxxxxx
> Subject: [tri-med] cleft palate
>
>
>
> Does it make sense to fix a cleft palate? Refoel is now nine
> months old. He does show some sucking ability. Does anyone have
> experience with trisomy 13 and severe celft palate. He has no
> nose and restrticted arirways, so there is little chance he will
> be able to get out the trach. Does it make sense to make him go
> through all those operations to fix the palate? Sincerely, Arthur
>
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